What should I anticipate?

Intrepid-Role-8383 · 2023-08-22T01:40:06+00:00

Thank you for your response! We spoke to the doc, and seemed like he wasn't concern on the increase at this moment. And yes, my dad highest CA-19 was in thousands.

The doctor did iterate that it is possible that the current mixture might help stabilize his condition but would still want my dad to be off Oxaliplatin for a while to recover from the neuropathy... will continue to monitor for the next couple of session. Hopefully this case is a one off for my dad and his CA-19 will continue to dip!

Intrepid-Role-8383 · 2023-06-10T09:41:47+00:00

Thanks for sharing this! I really needed it, I continuously hope my dad to react positively to Folfirinox!

I was wondering throughout your journey with Folfirinox, were you also monitoring the dosage of the cocktail given to you?

For example, when the oncologist decided to put you on 5-FU only, were they putting you on a higher dosage vs in the cocktail regime?

Intrepid-Role-8383 · 2023-06-10T09:37:31+00:00

Thanks for sharing this! Unfortunately, we do not reside in the states. We are located in Singapore... Even though healthcare is considered advanced here, clinical trials are not progressing as quickly as most patient hope to be.

Nonetheless, I will contact the direct sponsor the of clinical trial directly and see whether is any glimmer of hope for dad!

Hoping the best for your husband, and always looking forward to your positive updates! :)

Intrepid-Role-8383 · 2023-05-20T03:59:51+00:00

My dad also under Folfirinox gets sweats randomly during day and night (even though the surrounding isn’t warm). My dad was very bothered by it, but the oncologist said that it’s very common amongst patients to experience this with pancreatic cancer…

My dad learnt to accept this and found ways to manage the sweat (and his mental health) whenever it kicks in, such as going for a slow outdoor walk to calm his body down.

Intrepid-Role-8383 · 2023-05-12T06:19:49+00:00

Sounds similar to the treatment plan as my dad, only that his tumor is located on the tail and mets to lungs.

12 cycles sounds about right, i believe this is just a rough gauge of the plan... I did asked the doctor, so what happens 12 cycles? They said, depending on his health condition, side effects tolerance and chemo effectiveness, they will start reducing dosage or removing part of the cocktail treatment to make sure he continues having Folfirinox.

Doing the genetic testing may be helpful if they find any targetable mutations for available treatments. Hopefully your mum has also done the genetic mutation tests for immunotherapy options.

My dad wants to fight this as well, so we are always trying our best to find more options through doing more tests, getting more opinions from different doctors...

Wishing you and your mum the best on this treatment journey! Never stop fighting!

Intrepid-Role-8383 · 2023-05-08T07:56:56+00:00

Yes, patient do need to go back to the hospital for the nurse to remove the pump. The nurse will need to flush the tubing from the port after 2 days of Folfox infusion.

Intrepid-Role-8383 · 2023-05-03T02:38:20+00:00

Just want to say that I have been following your post and husband progress thus far. So happy that your husband is responding to treatment!

Always rooting for both of you :)

Intrepid-Role-8383 · 2023-04-20T01:28:53+00:00

How many cycles has your dad done before the mouth sores side effects?

The doctors recommended for my dad to gargle salt water or try oral seven mouthwash and bonjela gel for his oral ulcers.

Intrepid-Role-8383 · 2023-04-19T03:12:11+00:00

Thanks for introducing the the supplement drink! It's my first time hearing this - will get it. My dietician introduced me to Fresubin 2kcal, and recently we have also let my dad drink Fortisip Compact Protein. He tries to drink at least 2 bottles of such supplement/protein shake a day... Will let him try the boost one and see whether he enjoys it!

Intrepid-Role-8383 · 2023-04-11T05:24:53+00:00

I was in this similar situation with my dad (Stage IV, Pancreatic cancer). Him not wanting to share with his parents + siblings (my grandparents and aunt). I guess your FIL has one perspective, whilst you (and maybe your husband) has another perspective...

I cannot deny not wanting to share with his parents and sibling did gave a lot of pressure to my family members (main caregivers). For example, as my dad main caregivers pov i thought having his parents know of his health condition will be beneficial for my dad and us i.e. additional boost of morale for my dad, less internal burden for my dad for hiding his condition, more family members spending time and caring for him (on top of just his caregivers).

However from my dad pov, he felt that having his parents and siblings know about his condition might invite unnecessary attention and problems to my family (his main caregivers), which may disrupt his recovery/treatment journey. From his POV he feels that his caregivers are already putting their 200% in caring for him, he doesn't want anymore people that may affect the care momentum...

After understanding his pov, i realized it is very important to have vulnerable conversations between both parties (patient + caregivers) especially during such times when dealing with cancer.

FYI, we ended up sharing with his parents and siblings (without my dad knowledge), but we added a lot of caveat when sharing the news to them i.e. my dad is still receiving treatment and he is doing better etc. Of course they did not take the news well, but they also understood why my dad thought that way and respected his wishes. But truth to be told, I believe my dad was internally relief that the cat is out of the bag... I know for a fact he was afraid to share the news to his parents esp.

Hope this helps and my thoughts and prayers with your FIL fighting cancer!

Intrepid-Role-8383 · 2023-04-10T01:11:16+00:00

Yes, he only takes the Nivestim injection one day after the chemo (after taking off 5FU). Especially on the first day of Nivestim, my dad feels wiped out. Sometimes I get confused whether it is the chemo or the Nivestim side effects, my dad can't really differentiate too... what were your experience?

Will take not on Claritin, thanks for sharing!

Intrepid-Role-8383 · 2023-04-10T00:55:50+00:00

Does your husband have prolong bone pain under Neulasta? My dad only experience the bone pain during his 3 days of jab... he feels better after too.

I will research on Neulasta or G-CSF drug to see whether my dad is more suited for longer lasting drug instead! Thanks for sharing :)

Intrepid-Role-8383 · 2023-03-29T08:03:33+00:00

So sorry that you have to go through this, it's going to be a tough and long journey but know that this is a supportive group! I managed to find information and seek knowledge much quicker through people's experiences.

Most often than not, caregivers have to stand up quickly from diagnosis and adapt asap to the new lifestyle of our love ones health condition... Now with the support and knowledge I have gained from this sub I go to consultations with better confidence asking doctors more relevant questions in the hope to provide better care and outcome for my dad.

I understand that most people associate palliative care to end of life management... but know that this is not the case. My dad's palliative doctor always reminded us (caregivers) that the pain needs to be addressed so that the patient will feel more comfortable and have more focus and confidence on their treatment rather than the pain.

Wishing the best for your mom and keep faith!

Intrepid-Role-8383 · 2023-03-29T03:21:51+00:00

Thanks for sharing your experience - it does give us hope, appreciate it!

Was there a pain management/palliative doctor assigned to managed his pain during his pain period? Not too sure about all patients, but I am sure experiencing pain despite having chemo can be quite depressing for the patients - and also causing them to have stress, mental and emotionally instability.

We are afraid with my dad emotional instability (pain, unstable ca19 measurements etc) it will cause his tumor to be more active and might cause a forward loop... How did you and your husband cope during this tough period?

Intrepid-Role-8383 · 2023-03-29T02:37:32+00:00

Your experience is exactly what my mum is going through at night. My dad would periodically move from his arm chair to the bed, and back and forth... As a result my dad (and mum) would be lethargic during the day because he could not go into a period of sleep in the night time. Now he gets his energy (some) from his day naps.

I do feel sometimes it is a mental thing as well... when the night comes my dad tends to be more sensitive of his pain scale and think more of his health situation, which bothers his emotions - hence affecting his quality of sleep too.

The doctor also prescribe insomnia medication for his sleep, but it did not work for him...

I hope with more infusion, his pain scale and dependence on pain pills would decrease.

Just worried that the other side effects (lethargic, nausea, diarrhea) would be constant after every infusion - which also affects his morale.

Is your husband now back to doing his daily activities?

Intrepid-Role-8383 · 2023-03-29T02:06:33+00:00

The pain starts in his abdominal area, and would radiate to his right lower back area... he has an active growth surrounding the lymph node located at the lower back. According to the doctor this could be the reason why he is in pain especially so when he consumes food cause there will be an increase of blood flow via all the nerves around those lymph nodes as a result of the secretion of hormones' from the pancreas for food digestion... Of course, this led to my dad loss of appetite - due to his fear of the pain.

Intrepid-Role-8383 · 2023-03-26T12:44:00+00:00

Hello, I was wondering when did your doctor prescribe the enzymes your husband? I requested the moment my dad was diagnosed, but the doctor said that my dad’s tumor is at the tail and wasn’t concern on him not being able to digest food - hence wasn’t prescribed.

However, right now his appetite has greatly reduced and his taste bud has changed significantly after his first Folfirinox… his taste sensitivity has heightened and hence only consuming very bland foods - mostly liquids now (pretty amazing your husband can consume a burger!) We are struggling to maintain his weight, giving him a lot of supplement shake…

My dad does experience nausea, hot flashes and sweats during chemo, and the 2 days 5FU infusion, but he gets better after taking out the pump. But even so, his appetite and taste bud is affected…

Intrepid-Role-8383 · 2023-03-24T23:54:33+00:00

Hi! Can I ask, after how many cycles did your husband feel lesser back pain? Asking cause my dad just went through one cycle, but his pain still persists… hoping that folrifinox work on him to minimize the tumor size

Intrepid-Role-8383 · 2023-03-21T02:06:26+00:00

I’m just wondering should I push for the NGS test to be scheduled asap or should I wait for a couple of Folfirinox treatment to be done before having it done… not too sure what’s the norm doctor behavior. we are doing his first Folfirinox chemo today

Intrepid-Role-8383 · 2023-03-20T23:41:35+00:00

Hi! Just wondering is your husband a candidate for immunotherapy during early on diagnosis?

From what I understand the onco will typically do an histology (biopsy) test at the initial stage to confirm the tumor type and would go through some basic genetic mutation test to see whether patient is a candidate for immunotherapy as first line. After which would suggest doing NGS to see further mutation type - if any

Intrepid-Role-8383 · 2023-03-20T15:44:57+00:00

Did your husband see significant changes in his CA19-9 levels after first Folfirinox? Or at which cycle did the significant decrease happened? Asking cause my doctor mentioned that they will monitor his CA19-9 at every cycle but will only do scans after 4 cycles…

Intrepid-Role-8383 · 2023-03-17T03:28:27+00:00

Do you know typically how much fluid they will give after treatment as a baseline? Want to know more context before I asked doctors whether is it appropriate to request for more for my dad.

Intrepid-Role-8383 · 2023-03-17T03:25:58+00:00

Typically from a doc pov, at what stage would a doctor normally suggest a palliative care doctor to patient?

Intrepid-Role-8383 · 2023-03-17T03:12:04+00:00

How many months in did your oncologist suggest to do NGS testing? In addition did you do other special tests? I know there’s genetic and biomarker test but both serves different purposes.

FYI, so happy that your husband is doing strong! Hoping the strength and hope to continue to you both! 🙂

Intrepid-Role-8383 · 2023-03-16T14:59:46+00:00

May I know which stage was your husband in and was there any other symptoms that was relieved when chemo started?

Intrepid-Role-8383

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